Rare diseases' budget jumped to Rs 82 crore within 3 years: Health Ministry

50% are onset at birth, affects about 1 in 20 Indians

From zero, India's budget for rare diseases has surged to Rs 82 crore within three years, said Dr L Swasticharan from the Union Ministry of Health and Family Welfare (MoH&FW) on Tuesday.

Rare diseases are conditions with fewer than 100 patients per 100,000 people in the population. While over 350 million people worldwide are affected, about 1 in 20 Indians is affected.

The Additional DDG with the Directorate General of Health Services (DGHS), Swasticharan, said the government has also established a rare disease fund to support the patients’ treatment.

“In 2022–23, we supported 203 patients to the tune of Rs 35 crore, a big leap from zero funds three years ago. In 2023–24, the amount rose to Rs 74 crore. In the current fiscal, a Rs 82.4 crore budget has been assigned, out of which Rs 34.2 crore has already been disbursed,” Swasticharan said.

He added, “However, we realise that even this may not be sufficient as we do not want to leave any patient behind.”

Swasticharan said this while speaking at SMArtCon2024, a two-day National Conference on Spinal Muscular Atrophy (SMA) organised by India’s non-profit Cure SMA Foundation in Gurugram.

He noted the Health Ministry was “actively considering establishing a specialised technical expert group focussing on SMA.”

SMA is a rare and genetically inherited neuromuscular disease that robs people of physical strength by affecting motor nerve cells in the spinal cord.

Swasticharan said, “Called Tech MSA, the Group will advise centres of excellence on rare diseases spread across the country on what needs to be done regarding SMA and provide technical inputs. If we can successfully solve the challenge of SMA, the same model can be replicated for other rare diseases in the country.”

He also called for a “synergy between the government and the medical community to address the challenge of rare diseases in India.”

“We have a national policy for rare diseases and a mechanism to include more ‘orphan' diseases in the list. The medical community must come forward and help the government identify priority diseases for attention and treatment, as funds are limited. We need to make drugs available and affordable for all patients,” he said.

He noted the government was also “focussing on indigenous research and production, supportive therapy, and CSR funding.”

“We are requesting pharma companies to provide funds to set up specialised clinics for rare diseases where patients can go for treatment,” the expert noted.

There are more than 7,000 rare diseases known or reported worldwide. About 80 percent are genetic in origin; 50 per cent are onset at birth, and the rest are late onset.

Rare diseases include inherited cancers, autoimmune disorders, congenital malformations, and infectious diseases, among others.

https://www.tribuneindia.com/news/health/rare-diseases-budget-jumped-to-rs-82-crore-within-3-years-health-ministry/